May Update and Mother’s Day Thoughts

The Grotti family had a really fantastic Mother’s Day celebration last weekend, which included a hike, ice cream, and planting new lilacs in the yard.  Since I had been away at a conference for a few days prior, the kids were much more lovey than usual, and I think we all had a pretty tremendous time.

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Following Mother’s Day, we had numerous visits to the hospital for a combination of sick visits with Pulmonology, (Jack is fighting another virus and has been getting fevers pretty constantly for over a week) and follow ups.  Medically, there’s some positive news to share on several fronts.  Some time ago, Dr. Chidekel (Pulmonology) had given us the green light to place Jack on CPAP at nights rather than continuing with a breath rate on his vent.  With the exception of his most recent bout of respiratory illness, it’s been going very well for nearly 2 months.  This continued weaning from ventilator support is a great sign.  We’d love to say good bye to the incessant night-time beeping of that machine!  Our next visit is June 6th, and at that time we’ll schedule a sleep study to learn what’s really happening with Jack’s Co2 levels and with his brain at night.  This is likely to happen this summer.  There will also be another swallow study this summer to help us learn how much progress Jack has made with his eStim therapies.

Jack also had follow up visits with Dr. Piatt and Dr. Walter, who have continued to monitor Jack for any signs of tumor reemergence.  They indicated that we should have an MRI in November.  If that comes back clear, Dr. Piatt said he feels that “we can declare victory over that tumor”.  Another amazing piece of great news!

Jack wowed Dr. Walter with his spoken English skills–particularly when he stuck his finger in his ear and held it up to Dr. Walter, saying, “I got some potatoes in there!”  (I’m sure oncologists could use a good laugh every now and again, but I was a bit mortified by that one…)

I was struck during my recent visits to the hospital at how comfortable –happy, even– I felt when I was there.  I tried to puzzle through this very strange feeling, and a talk I attended by Dr. Kimberly Griffin, who studies the identities of transfer students through the lens of intersectionality helped me to make some sense of this.  For any working mom, identities are always in conflict.  When you explain to the crying child that you have to go to work, when you explain to the supervisor who was expecting something from you that you have to go fetch the sick child, there is an uncomfortable clash of very important identities.  I’m a woman, a mother, a wife, a daughter, a professional, a scholar, an artist, a writer, an advocate, and an educator (and these are just the identities that spring readily to mind).  As this intersectionality theory points out- we are all complex, and these identities wax and wane in primacy throughout the day, the week, the lifetime.

Lately, following some pretty wild shifts at my workplace, I have found my professional identity to be much like a hot, brittle planet orbiting a bit too close to the core of the system for its own good.  Navigating the context in which that identity exists has recently forced me to aknowledge the gravity that I have (unwisely) given to this particular aspect of my self.  Being at the hospital takes all of those questions and those unrelenting self-judgments, and silences them.  That planet is knocked into a completely different orbit when I’m back in those hallways, looking at all that could have been, and all that we have accomplished.  I can have just a single, comfortable “me” when I am there, and no one faults me for that– least of all myself.

I find myself mulling over this lately.  Is there a way to meld my professional life with this other identity?  Is there a way to take all of this theoretical and practical knowledge of information literacy specifically, and education and learning more broadly, and apply it to help other parents of a medically complex children? Is there a way that I can give back?

… I have some ideas.  But that will have to wait until the next blog post!

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December: Thanks for waiting for this update

Hello, all!  Sorry it has been a while.  Much has happened this fall, and there is much news to share (how could there not be, with two fast-growing kiddos in the house!?) I have taken up a new role at work, and thus have found that shifting sands and new projects of a kind that I have little prior experience with have taken up most of my waking hours and focus over the last few months.  That landscape only promises to intensify, but I am committed to maintaining my writing here- please be patient as updates may be sporadic over the next few months!

Jack had an MRI of the brain in early November, and I am pleased to report that it was clear.  There is no longer a great, gaping ‘cyst’ where the tumor had been, the ventricles are of a moderate (no longer swollen) size, and most crucially, there is no sign of a re-emergent tumor.  I was surprised, thrilled, and a little terrified when Dr. Walter informed us that there is no further need for regular MRIs.  He feels that given Jack’s tumor type, the greatest danger for reemergence is likely behind us.  It will be a strange thing not to get those nerve-wracking tests on a regular basis… and it will be hard to feel secure without being able to tell myself that a recent scan showed nothing.

Further shunt failures are likely for Jack, so there will certainly be MRIs in the future– just not regular ones.  I think this ushers in a whole new phase, and is really great news.

FullSizeRender (51)We had a more sobering visit just a week later with the neurologist who is now following Jack as a result of the April seizure.  Back when the seizure had taken place, an EEG (a test used to detect abnormalities related to electrical activity of the brain) was done.  At that time, we were told that there were some abnormalities with the scan- nothing serious.  I assumed then that this was likely because of the electrical storm that had been happening in his brain just hours before.  In November, we took Jack for his follow up EEG, and found that- while there was no sign of epilepsy (great news)- the scan did not show a perfect, untouched brain that is functioning exactly as any toddler’s might.  There are some impacts that are consistent with the kind of damage that his brain suffered.  I’m being vague here- largely because this is the first time that I have hit upon a part of Jack’s story that I feel I need to treat with some sensitivity… because I don’t know what Jack’s own feeling will be about sharing this information some day.  Our brains- their limits and their capacities- make us who we are.  This is a fact that I’ve struggled with my whole life; I know how important it is for one to make up her own defining narrative on the subject — so really, it’s up to Jack to decide when and how to tell this part of the tale.

IMG_2175We know that there will be some differences in the way that Jack’s brain works.  But we don’t really know what that will look like.  What I can say is that what I see at home is amazing progress- jumping, running, a sense of humor and curiosity, a temper, empathy, burgeoning communication abilities, sociability, and interests that are all his own.  I don’t see him really having trouble making his own way in the world- though a parent never stops grieving when their child’s way is harder than they wanted it to be.  Our neurology visit gave us a reminder of this hard truth, but it is just one small point of data in a sea of progress, and there’s not much that we can do with that data right now.

Jack has also let us know that he prefers to use his voice over his signs.  He’s figured out how to speak over his trach, so he is pretty vocal even without the valve.  One day recently, he got off of the ambulance at the end of the day and we noticed he wasn’t using his voice- he was signing just as if he’d never stopped.  It turned out that his cuff had been slightly over-inflated, cutting off the airflow to his voicebox.  He was nonplussed.  Just switched right back to his signs until we figured out what was up.  He and I also picked our signs back up at a recent, rather noisy event, when we couldn’t hear one another well.  It was gratifying to see him using all the tools at his disposal.   I’m really grateful that we invested the time and energy in sign language for Jack.  When he vocalizes, it is often very hard to understand him– particularly when he tries to tell you a lot all at once– but he can often get his point across fairly well.

Here’s a recent sample of Jack talking (with his valve on) so you can get a sense of how far he has come this semester!  For those that may not be able to understand him or to access the audio, here‘s a quick transcript.  (Sorry I didn’t have time to caption).  He was pretty hysterical over the word “cheat”, and loved saying it over and over.

Sam is ever more chatty.  Each day I am amazed at how quickly the gaps in his knowledge about the world are filling in.  (We had a half hour long, rather loop-like discussion of the weather recently.)  Here’s a recent Sam-rendition of “Santa Claus is Coming To Town”, with transcript here.  I think you can see just how hilarious it is to live with this inquisitive, unafraid spirit who is going to pitch in, have fun, and say his bit… whether or not the details are fully fleshed out.  Wish I had a touch of his confidence!  More to come soon on Sam and the holiday break.  I also hope to share some of my thoughts on the connections that I’m coming to appreciate between patient advocacy and my own line of work in information literacy in coming posts.  I’m also hoping to write more about work-life balance in the coming year.

Thanks for reading, and for bearing with me through the last long lag!

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Seizure / Living “in the woods”

First of all, Jack and Sam are fine.  We’ve had an eventful time since Jack’s shunt surgery, which I will detail in a moment, but first, I want to write about something that’s been on my mind for a few months.

A mother who is involved in an online community of parents whose children have tracheotomies recently wrote about what it means when your child is never going to be “out of the woods.”  I want to talk a bit about that metaphor here, because it has come to have a lot of power for me in the last few weeks.

Have you ever spent time alone in the woods?  (The actual, non-metaphorical woods, I mean.)  Everything in a natural landscape seems to be precisely tuned to the correct volume for the senses.  You can really take things in when you are outside.  Trees alert you to wind, light, recent rain.  Growing things make you note the passage of time in a way that you simply don’t while commuting, shopping, sitting at a desk.  You can watch the air condense and form mist in the evening.  You can actually watch it breathe over the earth.  Abstracts become concrete in this way.  Time, air, growth.

Have you ever spent time alone in the woods at night?  Now, nothing is concrete.  You hold the flashlight’s inconstant doughnut of light in front of you, filled with the inexplicable sense that something that has always been very close at hand has now swung its malignant attention upon you.  The person who serenely watched the movements of clouds over the lake hours before and made existential comments is now scarcely a person at all.  Just a small, small thing picking an unsteady path through the trees, acutely aware of how fragile her existence is.  She is part of the woods, not sitting above it somewhere, as vulnerable as the twig that cracks underfoot as she steps off of the path’s hard clay.

Being a medically fragile family is just like this.  When there are no fevers, no aspirations, no neurological symptoms, you experience a clarity and serenity that’s hard to express.  Your goals, once abstract, are concrete and stay in sharp focus.  You are not distracted by things that don’t matter.  The slings and arrows of the day fall away easily.  Your children’s accomplishments seem amplified when it was never a given that they’d accomplish them.  You feel almost heroic with this energy and are humbled by the thousand acts of grace within your community that you are uniquely privileged to witness firsthand.

And then… night sets in with the phone call in the midst of a busy work day.  Some new symptom, scan, or emergency arises, and the lights are out.  Now, you feel the enormity of the uncertainty of your situation, and your powerlessness in the face of it.  All the perspective you thought you had in the light is utterly gone in these times.  What can you do?  You wait the terror out and hope for the daylight to come back.

We’re back visiting the nighttime woods with Jack.

Monday, we got a call from Jack’s daycare indicating that Jack had a “neurological episode”.  He was just about to have speech therapy, when he put his chin down on his shoulder, became non-responsive, and his eyes diverted to the right, twitching repeatedly, just as they did during the first days after tumor resection.  It lasted two minutes, and it took a full 15 minutes afterwards to bring him back to himself.  I’d say seizure is one of the “big three” that we fear the most in Jack’s case… tumor reemergence being #1, severe aspiration and/or loss of oxygen being #2, and seizures being #3.  What makes this episode so frightening is that its something we’ve never seen before.  What does this new development mean?  After a day in the ER, a rapid MRI scan, an EEG and a follow up visit with Dr. Piatt, we are no closer to understanding than we were before.

I was grateful that Dr. Walter called to assure us that this doesn’t mean that the tumor is reemerging, and most likely the recent shunt surgery is to blame.  There are no guarantees that Jack won’t develop a seizure disorder- after all, his brain has had many assaults.  Indeed, Dr. Piatt concurred that Jack has enough risk factors for seizure that long-term medication sounds like a wise course.  This new medication is worrisome to us, as we don’t fully understand its side effects or implications.  Our appointment with yet another team of doctors in the Neurology unit at the end of the month should provide more information.

So Jack now has a new medication, and we have a new threat to monitor, but life goes on as before.  Monday night, after a day which included a seizure, being restrained for an MRI and being forcibly hooked up to electrodes for a lengthy EEG, he ran around in his diaper laughing his silent laugh and chasing his brother.

imageNo, he may never be out of the woods, but it is clear that he is enjoying the hike nonetheless.

Emergency Surgery

Hi, all:

Jack is recovering from an emergency surgery that took place on Monday night to repair his shunt.  He’s home now, and doing well, though with some more battle scars.  Those of you who have been readers since February 2014 may remember that the shunt was placed to allow the cerebral spinal fluid to drain properly out of the ventricals of the brain, since the tumor destroyed some of the natural pathways that exist, and the third ventriculostomy performed by Dr. Piatt did not seem to resolve the issue.  Unfortunately, shunts are a poor technology, and they fail at a rate of about 20%… meaning that if you have a shunt that works perfectly for its entire lifetime of 10 years, you can expect at least two surgical revisions during that time– though many patients have many, many more revisions than that.

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Here’s how it all went down:  On Monday morning, Jack woke up happy and playing, but John made a comment that his balance seemed a little ‘off’ somehow– which is hard to discern in a toddler who, well, toddles. A few hours later we received a call from Nurses n Kids stating that Jack was vomiting and not himself.  I raced home to pick up John and Sam (who was home sick with a fever that day) and then to pick up Jack.  Jack’s nurse also commented that he seemed “shaky”.  Once home, we played with blocks and watched Signing Time together.  But no matter how slowly I set the pump for his food, Jack couldn’t keep anything down.

I called Jack’s pediatrician, who recommended that I call neurosurgery based on my concerns about both the vomiting and loss of balance.  Neurosurgery recommended a wait and see approach, given that we have been dealing with some vomiting issues related to Jack’s changing food volumes.  But, by about 2p.m., things really went downhill fast.  Jack started staring off into space, acting really out of it, and we saw lots of increased vomiting and lethargy.

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With the help of Jack’s uncle Tucker, I took Jack to the new ER at Nemours.  We were seen by a doctor who initially made Jack’s diagnosis.  She agreed that what she was seeing looked like hydrocephalus.  We waited around until about 10:30 for an MRI, during which time Jack grew more spacey and sleepy.  It was very frightening.  Once the MRI was complete, things moved fast.  Dr. Piatt had been at home watching for the scan, so by the time we made it back from MRI to the ER, he had already called in and was on his way.  The surgery took a few hours, from midnight to after 2a.m.  Thankfully, a full shunt replacement was not necessary- though an additional incision had to be made to move the catheter that enters the brain to a more helpful location.

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Less than 48 hours after the surgery, Jack was completely back to his usual self.  It was a stunning turnaround.  Though the two-day hospital stay was nice in its own way– we got to see many of the people with whom we became very close last year and got to experience the new and improved hosptial accommodations– Jack was very eager to get out and was making a sign that was a cross between “sunshine” and “outside” over and over again as we wheeled him out of his room and to the car.

I’m sorry to report that this hasn’t been easy on Sam.  He enjoyed his unexpected time with Gramma and Nana, and happily resumed his play with Jack for the first several hours that Jack was home, but then suddenly stopped short, looked aghast at his brother, and said very clearly, “Jack a boo-boo on head,” and pointed repeatedly.  He cried and needed lots of hugs and reassurances, inspected the rest of our heads for boo boos, and he’s been acting out quite a bit ever since.  He repeats this phrase several times daily, trying to understand.  What a vast difference from a year ago, when neither child understood any of this.  Now, things are starting to become clearer to them, making the way forward less so for us.

But we’ll continue to do our best.

Moving on into Spring!

Hi there!

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Jack had another clean MRI of the brain this week, and a productive follow up visit with his neurosurgeon, Dr. Piatt.  Monday will bring another follow up with Oncology, and we’ll decide how much monitoring Jack is going to need as we look to the future.

Since my last update, things have been going really well for Jack.

Jack has learned more than 25 signs, and is communicating with us nicely through gesture, some cooing vocalizations, and sign.

We had a great visit with pulmonology back in March, and we are now un-cuffing Jack’s trach several times a day for several hours to see how he tolerates it.  if he tolerates it well for a few months, we may be able to fit him with a speaking (Passey-Muir) valve this summer!  It will be so wonderful to hear his voice again.  I have dreams in which I hear his laughter.  I really long for that sound.  Every day brings us a little closer, I think.  All signs are pointing toward a successful move to a speaking valve; although he had many colds and aspiration close-calls this winter, Jack did not end up with chronic pneumonias– so his lungs have remained healthy despite the challenges that he faces.  When you stop to think about that, it’s pretty amazing.

Although we hope for a successful move to a speaking valve, we cannot be certain that this will happen, and so we have been very involved in trying to get Jack enrolled at the Delaware School for the Deaf’s pre-school program with the hope of immersing him more fully in sign language.  Although Jack has only a unilateral (one-sided) loss of hearing he does qualify for services, which is a great benefit to our family.  We hope that Jack will be able to acquire language… not just the scattered signs that his mother has been able to pick up here and there.  These services will also help us to learn what Jack needs from the family in order to help him to maximize the hearing that he does have.  Once we finally get this going, the sign language scaffold will only strengthen Jack’s little brain– whether or not he is able to tolerate a speaking valve in the future.  It’s not been too easy to get this going, however.  Jack needs to be in the presence of someone who is trained in his care 100% of the time, which means that on preschool days his care will have to be split between a home-care nurse and his regular nurse-run day care center… a thing that is proving a bit harder to wrangle with Medicaid than it really should be.  Once we get the final doctors’ notes, I think we will be alright.  Fingers crossed!

And… man oh man this kid can walk!  Here’s a video that gives you a sense of how much movement he’s now able to achieve on his own.  He’s still unsteady, but he gains confidence every day, and we sure are proud of him.

Although there is so much good news, I should temper this with a bit of reality.  Jack has been receiving e-stim therapies on his face and on his throat for about 6 months, but we have not really seen any improvement in his swallow or his ability to keep his saliva from aspirating into his trach.  He remains extremely vulnerable to the threat of aspiration, particularly when he vomits.  Over the last few months, he’s had some trouble with this.  His nutritional requirements have increased, meaning that the volume of food that his stomach must handle is greater, and the rate at which his food pump delivers food to his stomach has also increased.  We’ve seen some frightening night-vomiting, and some in the morning.  We are still trying to find the right balance between safety, his need for mobility, and nutritional needs.  But I think we will get there.

Now… Sam!  March-April 062Sam is doing great, and is adding simple sentences like “Shut the door”, or “Dinner is too hot” to his ever-expanding repertoire.  He loves signing also, though he isn’t very consistent with how he uses it. He can’t say the “J’ or the “S” sound at the beginning of words, so we hear a lot about the adventures of ” ‘Gack’ and ‘Nam’.  He’s become extremely willful!  Now that language, mobility, and feeding himself are all in the bag, it’s become clear to him that his parents pretty much exist to thwart his further explorations of the world.  So… we may have entered the Terrible Twos a bit early.

But, Sam is never intentionally rough or mean to his brother, whom he loves very much, and they play together pretty well.  Here’s a video in which Jack and Sam each use their own modes of communication to tell me about their toy octopus.

Looking forward to more fun in the months ahead!

Sorry It’s Been Awhile!

Today was Jack’s follow up MRI.  We are again hoping for a clean scan and no more signs of either hydrocephalus or the tumor.  Jack seems to have forgotten all of his hospital manners– he fought like heck today and didn’t want any of those scary nurses and doctors doing anything to him!

Since my last update, much has been going on for Jack and for the rest of us, too!

image Jack was recently evaluated for language skills as part of the follow up to his hearing loss diagnosis.  His receptive language skills were judged to be “age appropriate”. This feels like a stunning victory to us!  Jack listens, responds to his name, finds humor in things, plays and seeks to engage with others.  He responds to commands such as “give Sam a hug,” or “show me the doggie”. He clicks his tongue or makes gurgly coos to get our attention when he needs help, and he points at pictures and then to the corresponding real-life object in order to label and categorize.  He spontaneously waves “bye bye” to people.

Jack now has six signs under his belt:  Please, Wash, Kitty, Daddy, Doggie, More, and Phone.  He’s made up a sign for “swing” (he points and then rocks back and forth in pantomime).  He’s working hard on the signs for “mommy”, “baby”, and “open” and “close”, but hasn’t quite mastered them yet.  I really enjoy learning sign language and challenging myself to incorporate as many signs into my reading aloud or singing songs with the kids as possible.  It’s fun to learn something new in the same way and at the same time as the kids.

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Jack isn’t walking yet- progress in this area is slow.  However, he is now able to wobble-walk for considerable distances with just one hand being held for support.  I’ve also caught him standing independently for a few seconds once or twice.  I don’t think that walking is far away, now, though he will have to really work on his balance before he is able to get there.

The most exciting thing to watch now is the emerging relationship between Jack and Sam.  They are begining to play together more and seem to find their game of under-the-dining-room-table peekaboo to be the most hillarious pasttime of all.  They can also be found pushing one another on a little toy plane through the house.  When Sam is being pushed by Jack, who uses the toy as a walker, you can hear Sam chiming “Thank you Jack” as they go.  (Though it sounds more like “gank goo Gack”.)  They occasionally steal from one another, grab each others’ things and get angry when one gets his way and the other doesn’t, of course.  But Sam says hello and goodbye to Jack every morning, and Jack (who doesn’t quite understand that one has to use one’s arms to give a proper hug) lays his head on Sam’s chest affectionately when he sees his brother.  When one of the boys takes a tumble, the other is often there with a hug, a gentle head-pat or a toy to offer.  I’m really proud that they seem so empathetic toward each other- at least for now!

Sam’s language capabilities continue to explode.  He asks simple questions like “Mommy go?” parrots every language-esque sound he encounters, and his word count is currently somewhere over eighty.  Some of our favorite words and phrases that Sam uses right now include Octopus (“ah-boo-dis”), Bicycle (“Bi-tic-oh”), Noodles (“Nu-nulls”), and probably our ultimate favorite:  Cold (pronounced “CoOoOo” with full, shivery vibrato).

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Sam has also picked up some new names:  Tucker (“Tah-coo”) and Rachel (“Ba-tcho”), which of course refers to John’s brother and his wife, who have recently relocated to Delaware!  It feels great to have family in the area.  Right now, as they get settled into new jobs, etc., they are staying with us which has been a great help.  Jack has an enormous crush on Rachel, and plays a shy game of hide-and-seek which is really cool.

We have some further check ups with Oncology later this week to learn the results of our MRI, and on Monday of next week a full meeting with all of Jack’s therapists to learn how he is faring.  I promise I will try my very best to get back to you, my dear friends and readers, with an update as soon as possible  As always, thank you for holding Jack in your hearts!

November: Communication and Motion

I am sitting at Jack’s bedside in a dark room strewn with toys as he naps. He’s had a rough few days of pesky fevers, persistent headaches that scared the crud out of me, and now things have settled into a familiar pattern of a bad virus. It’s not too bad- just some extra meds and breathing treatments throughout the day, and extra vigilance on our part. The missed work is the hardest part, and I hope we will get through this one without a hospitalization.

When Jack has headaches that are not caused by ear infections, I panic. I pace around a lot and chew on my fingers. We are very good at keeping the “what ifs” under stern lock and key in this house, but when I see Jack crying and clutching at his head, all the bad scenarios crowd around me, and I remember that the swamp is very near.

Oncology assures me that a reemergence of the tumor is not likely. The greater fear is shunt infection or failure. Thankfully, Jack’s bad headache seems to have coincided with what was probably a viral fever, nothing more. If we see it again, we’ll be heading to Dr. Piatt for a consultation, I think.

Perhaps one reason that my fears seem so amped up this time is that Jack has been doing so incredibly well.

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There are two very big pieces of news to report. First, Jack is beginning to communicate! He can sign “please” now, and “wash”. It is surprisingly difficult to teach a child who is not rewarded with food how to communicate. Turns out, the bath and playing with water are favorites, so perhaps that is why “wash” has had resonance with him. I’ve been staying up late here and there trying to learn signs. I’m now signing “thank you”, “mommy”, “daddy”, “bedtime”, “cup”, “cat” and “play” pretty consistently to him, in the hopes that if done enough he will pick it up. His receptive language has improved as well. If you ask him if he wants a bath, he will drop what he is doing and head for the tub. He is pointing to things with more consistency.

Jack watches everything, but he often seems withdrawn. We wonder, is that just who Jack is- more of an introvert? Is he cognitively different from us? What is he thinking?  It was as if John, Sam, and I were on an island, a solid place made of names, with rules and patterns that made things knowable. Jack seemed adrift on an ocean that we couldn’t bridge. His arm-waving was unintelligible to us; our constant chatter a barrier to him. When Jack first “got it” and began signing consistently for things that he needed help with or wanted, it felt like we had thrown a line into outer space and hooked the moon. A chasm had been crossed, and perhaps the moon was not as far as we had always believed it to be. Perhaps it had been sitting at the dinner table with us all along.

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Sam is Jack’s great ambassador to the world of language; the more Sam can pick up of some basic signs, perhaps Jack will pick those things up too, as it is clear that Jack wants to copy everything that his brother can do. Sam had been saying and simultaneously signing “please” for about three weeks before Jack joined in. He also signs “more” and (less consistenly) “baby” and “eat”. Sam’s own language acquisition has hit the explosion phase. He is saying new words every day now. The newest item yesterday was “bus”. It’s exciting to see Sam begin to construct partial sentences such as “Daddy go?” or “Bye to Daddy” and to follow simple commands. However, the command thing doesn’t always work out the way we plan…. the other day, he was carrying around a hunk of banana that he clearly was not going to eat. We asked him to go throw it away. He obediently toddled into the kitchen and returned empty handed. Only two days later did we discover the banana neatly placed in the pantry on top of some canned goods. Yuck!

The second exciting piece of news is that Jack is begining to walk! He’s not interested in the truck push-toy that Sam used during this phase. What he likes is the musical pusher that plays tunes when walked around the house. His gait is his own- he walks by lifting his whole leg from the hip in a very stiff-legged motion, stabilizing, and lifting the other. He hasn’t worked out the knees yet. The leg on the right is also turned outwards a bit, the foot pointing out rather than straight ahead. My feeling is, that’s great! PT and OT can work on the particulars with him- the motivation to walk is what matters most to us, and he’s got it.

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So excited to see where we go next!